Thursday, December 11, 2014

These Hands


These hands served me well for fifty years, now they rest.
They are done grasping, twisting, pulling, pushing, and touching.
I'm grateful for all that they have done for me.
They have been my constant instrument. They have not left my side.
They did their work without complaint or fear.
They are done pinching, poking, clapping, tickling, and scratching.

Now they rest.  

Sunday, December 7, 2014

Update from Rick

Dear Friends, The View From My Window Is Still Lovely. However, I must apologize for not communicating These days… My correspondence by email Has been short, I have neglected my blog, I have stopped seeing visitors. This has that not been by choice. I have lost the ability to control my computer by my voice. My conversation ability is mostly just single word answers. Very frustrating, but recently my insurance coverage approved the pc eye go! This will let me control my computer with eye gaze. This is great technology, but will take some time to master. I am very grateful to have it. Very grateful for all of the support and prayers from my friends and caregivers. This is just another part of my journey. I've got so much to be thankful for, so much to look forward too.

Tuesday, November 11, 2014

Scarlett's Fire updates

Print copies sold = 53
Kindle versions sold = 7
Kindle versions Amazon Prime free promotion = 54
Scarlett's Fire also has received 2 great five-star reviews on Amazon. Thank you all for your support!

Wednesday, November 5, 2014

Results from the Writers' Digest contest for The Scent of Ginger


This year I submitted my book, "The Scent of Ginger" to the 22nd Annual Writer’s Digest Self-Published Book Awards. I didn't win the contest, but received some nice feedback.

Judge Number: 30

Entry Category: Genre Fiction

Books are evaluated on a scale of 1 to 5, with 1 meaning “needs improvement” and 5 meaning “outstanding”. This scale is strictly to provide a point of reference, it is not a cumulative score and does not reflect ranking.

Structure, Organization, and Pacing: 5

Spelling, Punctuation, and Grammar: 5

Production Quality and Cover Design: 5

Plot and Story Appeal: 5

Character Appeal and Development: 5

Voice and Writing Style: 5

Commentary*:

THE SCENT OF GINGER by R.K. Raker is a superb novel for readers looking for an intriguing story set in the beauty of Hawaii.

The cover is lovely. The back cover is a bit crowded, but the patient reader will be rewarded by finding out about the story. I found the author's photo and story completely inspiring. How wonderful that he has discovered such talent in adversity!

I was drawn into the story right away. I have visited three of the Hawaiian Islands, so the setting holds a special place in my heart. I really enjoy reading about Hawaii, and I think readers who don't know anything about Hawaii will find the book appealing as well. This is a story where the setting takes on increased importance since it's exotic, yet the author shows how much he loves the setting without bogging down the story with minutia. I like that the setting adds to, rather than takes away from the book.
The author does a great job in keeping the reader abreast of the new terms quickly and with no muss or fuss. I like that the definitions are at the bottom of the pages instead of in a glossary. The characters are realistic, the plot is intriguing, and the story uplifting. I am so glad this author has found an outlet in writing. The world is better for his talent.

Saturday, November 1, 2014

Living within the yes/no world


It was a warm, humid, no wind October afternoon in Honolulu, Hawaii.

"Do you want the window open or the air conditioner on?" She asked.

"Yes," I answered.

"You want the air conditioner?"

"No."

"Would you like the window opened?"

"No."

"Okay then, let's turn on the fan..."

"No."

"What DO you want?" She was quite perturbed by now.

"Both." I managed.

"You want the fan, the air conditioner, and the window?"

"Yes," I answered, trying to smile, even though I could care less about the fan.

"Great, is that everything?" She said, visibly relieved, a little bit confused.

"Yes," I responded, even though there were 10 other things that I wanted

She opened the window, turned on the air conditioner and the fan, and then she gave me the hug that I was hoping for... So goes my life living in a yes/no world.

The horrible reality of ALS is that you get to watch (live through) the progression of the disease. For some, the negative progression is faster. For me, it has been relatively slow and steady the last eight years. My brain stopped communicating with my muscles, first the legs, the arms, and then the fingers until I reached my current frozen state. I started with shortness of breath, moved to using a BiPAP machine several hours a day, to finally complete dependence on my Trilogy ventilator. I progressed from delicious plate lunches, to soft foods, to find myself now receiving all of my nutrition through a stomach tube. Through all of this, I was blessed to have my voice stay strong, but now, that is also beginning to succumb to the relentless downward progression.

Over the years, while everything else became weaker, my breath has worked well with my vocal cords allowing me to have meaningful conversations with my family, friends and caregivers. Those of you who know me personally remember my LOUD voice. It stayed with me for a long time. I was able to control my computer with speech recognition software, Dragon, and continued to stay connected through the Internet. I spent four or five hours each day surfing cyberspace, listening to music, and writing. The words, phrases, sentences, paragraphs, pages, chapters, and stories appeared on the blank screen with ease. Unfortunately, that ability has started to fade.

These days, I struggle to get even the simplest phrase on to the page. Short blog posts like this take several days to compose. Speaking on the Telephone is impossible. Face to face conversation is difficultI can just manage short phrase answers or responses. I have had to request the people that are closest to me to refrain from using multiple-choice or open-ended questions. To be patient with my slow, soft responses. I am still here with you. I am interested, and I still want to communicate, to converse... The loss of my ability to have free flow speech is very difficult to accept, but even though it's against my nature, I am doing my best to live within this "yes/no short answer world."

Thursday, October 30, 2014

Medicare policies restrict access to Speech and Communication devices


This past August I sent letters to all of Hawaii's Representatives asking them to contact Medicare and investigate the restrictive policies around Speech and Communication devices (read my original letter). Patients with ALS and other severe disabilities are being denied access to the durable medical equipment that is necessary for them to communicate with their caregivers, families and friends. So far, only Representative TULSI GABBARD has responded. Her message to me is below:

Thank you for contacting me about recent policies proposed by the Centers for Medicare and Medicaid Services (CMS) on Medicare beneficiary access to Speech Generating Devices (SGDs) and SGD accessories.  I share your concerns about these policies and have contacted CMS about the problems with their rules.

As you may know, CMS currently covers medically necessary SGDs as part of the Medicare durable medical equipment benefit.  Patients who utilize SGDs include Medicare beneficiaries living with a range of severe neurological and communication disabilities related to conditions such as amyotrophic lateral sclerosis (ALS), cerebral palsy, multiple sclerosis, Parkinson's disease, brain stem stroke, locked-in syndrome, and traumatic brain injury.

Over the course of the last year, CMS has made significant changes that make patient access to this technology more difficult.  Patients who utilize SGDs are some of Medicare's most vulnerable, and throwing up obstacles to SGDs only serve to make handling these debilitating conditions more painful.  Moreover, because of the prognosis of these patients, access to these communication devices is an immediate concern and many do not have the time to go through a lengthy appeals process.  As a result, I joined with other House colleagues to request information to better understand CMS's rationale and to identify some quick solutions that will address the needs of these patients while maintaining the integrity of the Medicare program.

We cannot take away a patient's only option for communicating with caregivers, friends, and family.  You can be assured I will continue to monitor CMS's consideration of these policies and the availability of SGDs.  Again, mahalo for taking the time to get in touch with me.

Sincerely,
TULSI GABBARD
Member of Congress

 
It's Not too late for you to write to your legislators. Please, take action. Send a message to your representatives asking them to investigate this issue!

Tuesday, October 21, 2014

Wednesday, October 15, 2014

Scarlett's Fire gets some positive reviews


Received some wonderful feedback for Scarlett's Fire! Please continue to send me feedback through email (rraker@hawaii.rr.com) or with a review directly with Amazon.

 I read “Scarlett’s Fire” last week while on vacation.  It was awesome!  Quite a page turner. There were many parts of it that I really liked and would like to share with you.

·         Love the extremes in size between a ‘shrimp’ and a giant squid…made me think of David and Goliath.

·         Scarlett added a lot of descriptive background to the story just by her observations of Corly’s intelligence.

·         Loved Scarlett’s desire to understand ‘motherhood’ and ‘love’.

·         Definite morality issue with the role of a Preservation society first playing the role of protector and then turning into a collector of species.

·         The concept of time was very fascinating to me.  I was impressed with Scarlett’s and Corly’s ability to be so patient about the passage of MANY years as part of normal life and also required to ‘change/improve’ their environment.  Time frustrates me.  I’m not a very patient individual so this gave me a very positive feeling of the power of patience (thank you!).

·         And then the whole world recreated itself…wow…what a great ending!
I hope you write more science fiction!!!

Tuesday, October 14, 2014

10,000 page views!

Rick's Window reached 10,000 total page views yesterday! That's FABULOUS! Thank you all for your support. I have made the comments feature more accessible, please join the conversation.

Wednesday, October 8, 2014

Not exactly what was expected, but still...


Well, the stellar start for Scarlett's Fire was not exactly what I expected – life never is... I did manage to convince folks to buy 41 soft cover copies of the book and 7 Kindle versions with my hard sell BAG tactic – it was sincere, but probably too pushy for some. Oh well, the sentiment was honest, I apologize if it came across too aggressive. The funny thing is that one friend bought 30 and another friend bought 10... I believe my sister bought the other one. That's hilarious! Especially when I had thought that I had sold to 40 separate people. No matter, I am still grateful to those good friends!

The goal is still out there. The universe is a big place. The potential is still there. The main thing is that I have not gotten discouraged – I still write several hours each day. The stories are still struggling to come out. The process is still therapeutic.

Sunday, October 5, 2014

Scarlett's Fire first review...


I have often said that "I write selfishly and that publishing stories is a therapeutic pastime for me" – This Is still true, but when YOU make the effort to buy the book, read it, and then take the time to write a review on Amazon.com, everything changes for me. Suddenly, my work is no longer selfish. I realize that we have shared something together.

It is such a thrill for me to think that the story I have written, the words I have carefully place on the page have been a part of your life. I begin to understand that I have a responsibility to you, the reader. It's really quite daunting and wonderful at the same time. My only hope is that the story, the characters, the plot and the world that I have created is a worthy of your time. That you have found some escape, some joy, some pleasure from the experience.

Your review allows me the chance to get much needed feedback – your comments are cherished. They complete the loop, the connection between us ... It's hard to express how meaningful this connection is to me, especially with my limited ability to physically engage with the world... All that I can really do is just say that I am very grateful! Thank you.

The first review of Scarlett's Fire appeared on Amazon today!

I finished reading this book just as headlines reported expansion of Pacific Remote Islands Marine National Monument, covering 490,000 square miles. Rare and undetected species will emerge, according to the report. To me, this means that R.K. Raker writes with creativity as well as cutting-edge research. The characters, their challenges, their reflections on their history and future - all result in an enjoyable reading experience.

Wednesday, October 1, 2014

Super September launch for Scarlett's Fire


September was a great beginning for Scarlett's Fire.

I am able to get reports from Amazon and I was thrilled to see the following copies of the book were sold!

Softcover printed version = 31

Kindle electronic version = 7

I am so grateful to all of you for your support! Please continue to help me reach my Big Audacious Goal (BAG) of 5000...

The Big Audacious Goal of "5000 sold!" is out there bouncing around the infinite expanse of space and growing stronger with each energy force that it encounters. The ripple effect is collecting momentum from the pure potential of limitless possibilities that exist within our universe. Each of you with your grateful mind and positive prayer helps the thought-energy continue to expand until the goal reaches fulfillment. The result will be spectacular!

Why 5000? Five thousand seems to be the magic number for literary agents and publishers to take notice of self-published authors. 5000 copies sold would also bring enough royalty income to pay for my health expenses for one year.

You can help me reach my goal by:


Enjoy the story and then write a review.

"Like" "Share" and Tell your friends.

Thank you!
Rick

Friday, September 26, 2014

Scarlett's Fire big audacious goal!


Scarlett's Fire is now available on Amazon.com – 5000 copies sold! (That's my goal.)

I have decided to place a big goal for the sales of this new book. I've always believed that you should have BIG AUDACIOUS GOALS – I call this giving yourself a "brand new B.A.G." The Inspiration comes from the James Brown song, "Papa's got a brand-new bag" (1965), where he praises an old man for being brave enough to take the dance floor and do his thing! (Click here to watch the YouTube video)

The idea is to place the Big Audacious Goal out there into the great universe. The goal, if it is positive and sincere, will bounce around the infinite expanse of space and grow stronger with each energy force that it encounters. The ripple effect collects momentum from the pure potential of limitless possibilities that exist within our universe. With a grateful mind and positive prayer, the thought continues to grow until the goal is fulfilled. The result can be spectacular!

Why 5000? Five thousand seems to be the magic number for literary agents and publishers to take notice of self-published authors. 5000 copies sold would also bring enough royalty income to pay for my health expenses for one year.

You can help me reach my goal by:


Enjoy the story and then write a review.

Tell your friends.
 
Come dance with me!

Wednesday, September 24, 2014

Scarlett's Fire is available now!

Purchase Scarlett's Fire paperback or Kindle on Amazon.com!
Corley, a gigantic black octopus-squid-like sea monster from the planet Corydon is angry that his 1000-year hibernation has been interrupted. He is furious that aliens have invaded his home and that they are melting the ice that covers his world. When he realizes that he is the last of his species, it's too much for him. He propels himself through the frigid water towards the surface looking for revenge. He goes too fast and accidentally breaks through the surface ice of his ocean world. As he floats weightless in the vacuum of space, and contemplates his death and the end of Corydon, he suddenly hears a high-pitched voice. It's Scarlett, a three-inch red and white banded shrimp, sent by the Intergalactic Zoological Preservation Society to save him. She explains that she is a curator for the IZPS and that the Corydonian Giant has been selected by the Great Creator to be preserved because he is the last of his species. Corley's initial reaction is that he would rather die than go with Scarlett to some planetary zoo, but she is convincing, and he understands almost immediately that there is something special and intriguing about the tiny creature. When Corley agrees to travel through space with Scarlett, he has no idea that the adventure has just begun.

Friday, September 19, 2014

This is the final cover for "Scarlett's Fire" – Bradley Wong did the artwork of the galaxy. I used the Amazon covered creator to do the rest...

Tuesday, September 16, 2014

You can never say "Thank You" to often...


She wiped the morning drool from the corners of my mouth.

"Thank you," I said.

She helped me sit up and get comfortable in bed.

"Thank you."

She turned on the television and served fresh coffee with a straw.

"Thank you."

Afterwards, she brushed my teeth, shaved and washed my face, combed my hair, and changed my shirt.

"Thank you."

She gave me my morning medicine.

"Thank you."

She flipped me on my side, so I could rest my back – prevent bedsores.

"Thank you."

She woke me up sometime later for my first stomach tube feeding of the day.

"Thank you."

She flushed my stomach tube with freshwater and changed my bandages.

"Thank you," I said.

"You say, 'Thank You' too much. You don't have to say Thank You all the time," she said.

"Why? I'm really thankful, so I say 'Thank You'... Does it bother you?" I asked.

I started to think about this... I do say THANK YOU quite frequently throughout the day, every day. Here it is, before 9 AM and I have already said this phrase at least 10 times!

"You don't have to thank me. I do things for you because I love you."

Of course, this was a wonderful answer to get from my wife of 30 years and my primary caregiver. However, I wondered if love is enough. I wanted to be sure that she understood how grateful I am to have her care and love every day... I was taught from a very young age to always be polite – to say, please, and thank you. It's a habit now. I wondered if I said, "Thank You" too often that the grateful feeling would be somehow diluted. I kept track for the next couple of days – turns out I average about 63 "Thank You's" per day!

No wonder she was getting tired of hearing those words, but I wasn't going to stop. So, I started to mix it up – started to say "Thank You" in different ways. With a smile, with a wink of my eyes, the click of my tongue, a positive attitude... I started to say this very important phrase in different languages – arigato, gamsahabnida, mahalo, gracias, merci, danke... It works! She knows how grateful I feel.
You can never say "Thank You" to often.

Saturday, September 13, 2014

Taking stock of my writing...


Just ordered the final proof for Scarlett's Fire... I thought that would be a good time to look at everything that I have written over the last four years. Wow! I really have been productive. Most of you know that I write because it is therapeutic, and something that gives me purpose— something to do every day. I also write because it's fun and the writing allows me to escape my frozen reality. I haven't thought too much about selling my books, but lately I've begun worrying about the family's financial situation. ALS is expensive! My goal now is to market and sell my books. I would like to make enough to pay for my medical expenses, caregivers and possibly something to leave for my love ones— lofty goals, no doubt.

I have started to contact literary agents. The rejection letters are coming in... But I've decided to stay positive and keep on trying! Wish me luck. I am always grateful for your support and encouragement. If you have ideas or suggestions, please contact me: rraker@hawaii.rr.com

Books and stories by R.K. Raker

Scarlett's Fire, a Sci-Fi Fantasy self-published with Amazon September 2014 (word count 35,000)

Dolphins Dance, second edition, a Fantasy self-published with Amazon May 2014 (word count 44,000)

The Scent of Ginger, a Crime Thriller self-published with Amazon January 2014 (word count 57,000)

 

The Gunslinger Series: an Epic Alternative World Adventure

The Gunslinger's Vision, Vol. 3 self-published with Amazon November 2013 (word count 23,000)

The Gunslinger's Fall, Vol. 2 self-published with Amazon September 2013 (word count 19,000)

The Gunslinger's Confession, Vol. 1 self-published with Amazon June 2013 (word count 17,700)

 

Narragansett, a Historical Fiction novel self-published with Amazon June 2013 (word count 116,000)

Not too late for Paradise, a Coming-of-Age novel self-published with Amazon April 2013 (word count 101,000)

The Bird-man of Nuuanu Valley, a Fantasy self-published with Amazon October 2012 (word count 34,000)

The Brookside Rooster, a short story self-published with Amazon August 2012 (word count 12,000)

The Hamster and the Gecko–A Survivors' Story, a Modern Fantasy self-published with Amazon April 2012 (word count 30,000)

Sealand 1001, a Sci-Fi Fantasy self-published with Amazon November 2011 (word count 51,000)

A Remarkable Life, lived by an Ordinary Person, a memoir self-published with Amazon May 2011 (word count 51,000)

Friday, September 12, 2014

Scarlett's Fire – Chapter 1 preview

Scarlett's Fire is coming soon! I thought that I would share the first chapter with you...

Chapter 1

 

The giant sea monster rose from the frozen depths of the southern ice pack on the planet of Corydon. He was a terribly huge, slimy, black, octopus-squid-like creature, extremely angry at being disturbed from his thousand-year hibernation. By his reckoning, he should have been sleeping for at least another one hundred and sixty years.

He didn't like being disturbed and the fact that the reckless beings populating the surface of the planet had somehow managed to raise the temperature to a point where the deepest and coldest ice had turned to slush, infuriated him. However, what really sent him over the edge was the realization that while he was sleeping they had sent sharp steel tentacles miles down into his innermost cavern—in search of who knows what, he didn't have a clue, nor did he care.

This will not stand.

He turned towards the light blue world above him, constricted violently and raced through the liquid ocean he called home.

"I'll annihilate them," he roared in an ancient language not been heard on Corydon for centuries.

He propelled his massive body through the cold water. His fury increased in proportion to his speed. The logical part of his huge brain told him to slow before he reached the ice sheet that covered his water world—I don't want to make the same mistake twice. Yet, his emotions sent him forward even faster.

He sent rhythmic blasts of sonar upwards to the surface expecting to receive images of a layer of ice several meters thick. This information would allow him to calculate his inertia and come to a halt a safe distance before the fragile shell that separated his liquid home from the inhospitable environment above. Instead, the echoes that returned were weak and poorly detailed. Only with careful analysis was he able to determine that the frozen barrier that had once surrounded the planet was gone.

Then he realized that he was going too fast. He had gone too far. It was too late. He broke through the surface of the frigid southern water like a meteor smashing through a gas giant.

The lack of friction and the sudden feeling of near weightlessness as he ascended into the thin cloud-filled atmosphere surprised him. He stretched his sixteen massive tentacles in all directions, grabbing for any hold that he could find. There was none, he was airborne. His seven eyes blinked and squinted in the bright sunshine of the two nearby suns. The rays burned his heat sensitive skin even though they originated 500 million miles away. He was too angry to feel the pain. The smoke from his burning flesh smelled rancid, but above that, the smell of lush vegetation, nitrogen, methane, and carbon dioxide flooded his gills—This is not the world I remember.

For countless millennia, his species had dominated the ice-encased world of Corydon. Even from the beginning, when his family was born from amoeba like microbes, they had ruled unopposed. They had evolved at a steady, but careful, natural pace, underneath the frozen surface of the planet. Unlike many intelligent species on other warmer planets, the Corydonians were in no rush. The cold nature of their world allowed them to evolve slowly and gradually. Over the millennia, they grew physically and intellectually enormous. There was no hurry towards a solution, a better future, or a final conclusion—evolution was on their side, they were perfectly suited to their perfectly balanced world.

The Corydonians, as they later named themselves, had enjoyed an unlimited supply of everything they needed to thrive. Algae trapped in the ice crust constantly regenerated the levels of pure oxygen in the planetary sea. Their gills, lungs, and overall physiology, efficiently metabolized the life-giving chemical. Breathing was never labored, oxygen was abundant. Food was plentiful. They fed, competition free, on the smaller warm and cold-blooded organisms that inhabited their liquid domain. They grew to gigantic size, unimpeded by disease, famine, or war. Their civilization also thrived. They created a society based on shared learning and cooperation. There was no need for competition, governance or exploration. They were social, but remained solitary.

As the average Corydonian's dimensions expanded and the population bloomed, they developed a society based on one-thousand year cycles. Adults voluntarily adopted these cycles in order to keep the balance between the resources available on the planet and the stress created by the requirements of their huge size and appetite—half the population hibernated while the other half patrolled the seas. This agreed upon norm meant that they spent the majority of their life alone, but they were never lonely. Their powers of telepathy allowed each member of the species to stay intimately connected without coming within hundreds of miles of each other. Only the very young stayed physically close to their parents, and then only until they were adolescents.

The average Corydonian lived to be around 180,000 years old. A Corydonian year lasted one cycle around both of its yellow suns—this is about three times longer than the typical Earth year. Time passed slowly for the giants. Females reproduced only once during their lifetime. These factors kept the population in check and the planet in balance. They were at peace with nature and themselves. They were satisfied with their cold liquid world and their place in the universe.

That was then, during the apex of their evolution, before the Giants of Corydon made the fateful decision to break through the frozen layer of ice surrounding their world.

It was an accident, really.

As he floated unanchored through space, bit and pieces of the ancient memory flashed through his mind. It had happened long ago...

As a young Corydonian, less than 20,000 years old, he knew from the teachings of his parents that there was a thin inhospitable atmosphere above the ice. He had been taught that their planet was one of several in their solar system, circling two giant suns, and that an infinitely large and complex universe held everything in place. The Corydonians understood that they were not alone in the cosmos, but they had no need to venture beyond their borders. They were content to stay isolated in their small corner of the universe. He absorbed the lessons from his parents with enthusiasm. He listened carefully and obeyed.

Nevertheless, a combination of boredom and curiosity, both byproducts of superior intelligence and thousands of years of a peaceful mundane way of life, had pushed him to poke his bulbous head through a meticulously burrowed hole in the planet's icy crust. He had been hunting new species of algae, but he had gone too close to the surface. The ice cracked and a great hole opened. He was sucked up into the atmosphere—that's all he remembered. He had woken up in his father's cavern. The scolding and lectures, he preferred to forget, but he knew immediately that the destiny of Corydon had been irrevocably altered.

And now, here I am again.

The Corydonian giant opened his mouth wide, fangs dripping with acidic saliva, and gasped as he rushed through the layer of clouds. His gills kicked into overdrive, straining what little oxygen was available from the warm mixture of gases. He thrashed about in the thin atmosphere, trying to make his way back to his liquid home, but he had gone too far. He had over extended himself. Gravity let go. The vacuum of space greeted him. Silence surrounded him. The lack of oxygen and the feeling of weightlessness were vaguely familiar.

There will be no rescue this time, he thought. I'm the last, they are all gone.

The Giants of Corydon were no more. Strangely, this realization didn't increase his anger, instead, a sad calm overcame him. As soon as he had awoken from his hibernation, he knew that he was the last of his species. When Corydonians were awake, they retained telepathic connections with every other Corydonian on their planet. Those connections had been severed. He knew instantly, that they were all dead, that had fed his unbridled fury.

It can't be over...

He halfheartedly sent his thoughts to the planet below, hoping for a response. There was none. The great Giants of Corydon were extinct. He knew the humanoids were responsible. He had no idea if they had destroyed his planet, his species, by accident or with some grand purpose. It didn't matter now. Yet, he wanted to know, he was still curious—that was his nature even during these last few minutes just before his impending death.

"The damage is done," he said to Corydon as he floated further and further away from his home. He tried to push his thoughts of justice or revenge aside.

"I relinquish you to the humanoids now."

He stopped thrashing about. He stopped trying to squeeze the last bit of oxygen from the atmosphere. He retracted his fangs and relaxed. His superior intelligence took control of his runaway emotions. He calmly examined his current position and predicament. He was no longer angry. In fact, he had become somewhat serene.

The clouds parted below him and with his seven magnificent eyes, he saw new landmasses and cities for the first time. The alien life that had come to his world just a short time ago, had been busy. Over the last 850 years, while he had been hibernating, they had terra-formed most of the planet. Where shiny smooth white ice had once existed, mountains, valleys, meadows and forests had been born. The great under-surface seas had been reduced to small lakes and rivers—some contained by huge gray rock-like structures. The smooth shape of the rock interested him, and the way that the structures controlled the flow of the water was intriguing. He easily deduced their purpose, but lacked the human vocabulary to name them.

Massive cities and sprawling industrial complexes spread across the landmasses. He knew what they were. He had seen images of them on faraway planets. The Corydonians had studied the evolution of humanoids for thousands of years, long before the tiny but aggressive creatures had begun to conquer and explore the galaxies. These stone and metal zones created the heat that had destroyed his world. He deduced that the rise in temperature had somehow depleted the planet's ability to produce enough food and oxygen for his species. Perhaps they had brought some deadly alien virus with them. He realized that if he had stayed in hibernation, he would have probably died from lack of oxygen without ever waking up.

"Why did they come here?" he wondered.

He looked at the city lights with interest. The light the dwellings emitted reminded him of the iridescent gems found in the deepest caverns of Corydon. The scene represented something horribly beautiful and serenely deadly.

"It's beautiful, isn't it?" a soft chirpy voice said.

The question smashed through his consciousness. His sonar-based auditory organs picked up the sound even though he was several miles above the Corydon Sea. His seven eyes broke wide open. He focused intently on the 360° view within his range of detection, attempting to confirm that he had really heard a voice. He saw nothing, but suddenly the shrill, high-pitched voice came to him again.

"I'm glad to see you've lowered your blood pressure and calmed your nerves," the voice sing-songed. "Acceptance is good. Do you feel better now?"

He twisted his gigantic body in all directions, trying to pinpoint the source of the tiny voice. The words were not Corydonian, but he still understood them without the need for translation. They were clear and reassuring, meant to add to the serenity of the moment, and yet he was beginning to become angry again. Thoughts of revenge flashed through his mind.

It would feel good to kill something, he thought.

"Oh no, that won't do at all," the crystal sounding voice said. Please, just relax.

The alto register and the confident nature of the voice aggravated him. The interruption and insertion directly into his thoughts was irritating. The intrusion into his personal space was unheard of. He refused to engage in conversation until he knew to whom he was talking.

Corydonians were capable of great power and destruction, but they were generally very polite. Their constant telepathic connection with each other required careful social etiquette and a sophisticated set of cultural norms. They never interrupted each other's thoughts without permission, and they took great care to respect the boundaries of family groups. Social status, earned through experience and seniority, was carefully considered before communication was initiated. These customs and behaviors guided their interaction and created the foundation for all relationships.

These useless comments are not welcome, especially during these final minutes, he thought. "YOU, whoever you are... I prefer to spend these last moments remembering, rather than creating anything new," he said.

"Remembering is good," the voice said. "I apologize for not introducing myself earlier. Please call me Scarlett. I am a Red and White Banded Cleaner Shrimp, a crustacean from the family Hippolytidae. My scientific name is Lysmata amboinensis. My relatives are commonly found on planets with warm oceans and coral reefs."

He felt the voice, as well as heard it. It came from somewhere nearby, but vibrated throughout his inner brain. He sensed that the voice originated from someone or something that had attributes similar to the telepathic abilities of his species, but it was unlike anything he had experienced before. The voice, the words and the meaning played in his head, but the evolutionary connection was not there. This was an intrusive voice coming to him through very different channels.

"I'm over here, just in front of your central eye," the voice said.

The Corydonian giant turned his attention to his seventh eye in the middle of his massive, oblong shaped head just above his gaping mouth. A tiny bright light blinked barely out of reach of his longest tentacle. He focused on it. The light dimmed and the metallic silver skin of a coconut-sized starship revealed itself. He had never seen a coconut, nor a starship for that matter, but the words and concepts magically defined themselves as soon as they appeared in the language center of his brain.

"WHO ARE YOU?" he boomed in his deep bass voice.

"I'm Scarlett, a crustacean. My scientific name is..."

"I know that already," he interrupted. Who are you?

A miniscule hatch hummed open on the top of the vessel and an unbelievably insignificant lobster-like creature exited and floated just above the starship. He couldn't believe how infinitesimally small the organism was, yet, he could see that it had a strangely powerful aura surrounding it. The aura stretched and flexed as it kept the creature connected to the starship.

The Corydonian considered devouring the fleck of speaking debris in front of him, but the space vehicle was so minute that only a swarm of millions would make a decent mouthful, and the alien being talking to him was ten times smaller than that. It was barely visible, and only then because of his great powers of concentration and focus. Under normal circumstances, the tiny speck would be flushed through his gills without notice. It wasn't even big enough to require a thought, or a cleansing sneeze.    

"I am Scarlett, a curator for the Intergalactic Zoological Preservation Society. I'm here to preserve you."

Images of creatures and organs floating in large jars of formaldehyde passed through his mind—once again he had never seen these things, but as they appeared in his mind, they were instantly recognized, defined and understood. He suspected that the alien's remarkable communication abilities had something to do with it. This was more than a telepathic connection.

"Preservation does not appeal to me," he blasted, intentionally sending acidic saliva, pieces of food and fermented odors from deep within his multi-chambered bowels towards the tiny shrimp.

"Oh, I'm sorry for that image," Scarlett said, waving off the moist saliva and bits of undigested food the Corydonian giant had spit her way. "I deserve that..." Preserve, is the wrong word, perhaps rescue, save, relocate or protect, would be better, she finished her thoughts telepathically.

Immediately, a new image appeared in the giant's brain. It was a beautiful ice-world similar to Corydon, but much larger. The temperature was perfect, the ice silent and solid, the liquid underneath full of pure oxygen, microorganisms, algae, and fatty nutritious foods. Other creatures similar to him were socializing and playing in the oceans, some were hibernating in caverns deep within the planet.

"I see what you're doing," he said glaring at the mostly light brown, but delicately red and white banded shrimp. "They are not Corydonians, and even if they were, the planet you are projecting is a million light years away. How would I get there? Corydonians don't travel beyond the seas of Corydon. We never even broke through the surface ice until 60,000 years ago."

"Corley, may I call you by your given name?" Scarlett asked. "I can help you. I can take you to the Intergalactic Zoological Preservation Society's galaxy, where you can live comfortably for many more millennia. There may even be a chance to revive the Corydonian species."

"How do you know my name? Leave me alone," Corley exploded. "How dare you presume to know me well enough to use the name my mother gave me? I think I shall crush you, and then die peacefully without the shrill noise of your voice penetrating my thoughts."

Perhaps a demonstration is in order...

Scarlett retreated into her starship. Seconds later, a clear bubble emerged from the back of the starship and began to expand. It grew rapidly and began to engulf the Corydonian giant.

Corley tried to flee, but he could get no traction in the thin atmosphere. He panicked. He struck out at the clear film with his tentacles and bit down on it with his sharp fangs. He spewed acid at the transparent cloud coming towards him. Nothing stopped it. It kept growing, stretching through and around him. His massive power had no effect on the bubble. He became tired because of the lack of oxygen. He knew that if he kept struggling, he would eventually pass out and die. Resistance was futile. He gave up and let the shrimp have its way.

"Scarlett, if that is your real name," Corley gasped. "I curse you for disturbing the last few minutes of my life."

The bubble engulfed him. Suddenly, pure oxygen surrounded him. He drank the life-giving chemical deep into his lungs. Liquid encased him. He felt cool and comfortable inside the transparent walls. It was large enough to hold him, and big enough for him to swim freely about. He swam for the edges, and they flexed before him. He sliced at the outer boundaries with his tentacles, and the clear bubble stretched, expanded and contracted with his efforts, never breaking. He was trapped, but he had been saved. He was alive. He was confused, angry, sad, dismayed and amazed. He stopped struggling and waited patiently. There was nothing more to do.

"Corley?" Scarlett asked, lowering her voice an octave.

"Yes, Scarlett."

Do you believe me now? She asked with her thoughts only.

"I can't believe you anymore than I can believe that my species have perished and my planet has been destroyed. Let me die."

"I can do that, but that would seem to be a waste of effort. We saved you once so that this moment could come to pass. Letting you die now would be a colossal squandering of time and energy."

"Are you suggesting that it was you who rescued me more than 156,000 years ago?"

"Suggestion, statement, fact... call it what you want. I'm not ready to let you die at this moment," but I am willing to give you a choice.

"May I devour you and then float peacefully into deep space?" Corley grinned, showing his fangs, hoping that was one of the choices.

"No, of course not—and please don't make that horrible face," Scarlett said.

He grimaced in response.

"You can come with me to the ice planet in the IZPS Galaxy and live a long comfortable life, or I can bring you back down to the seas of Corydon, where you will eventually die from starvation and heat exposure."

The choice isn't really mine, he thought.

Yes, it really is your choice, Scarlett replied.

Monday, September 8, 2014

Open letter to the National ALS Organization


I watched the president of the national ALS organization giving an interview on the PBS News Hour the other day. They were discussing the fabulous success of the Ice Bucket Challenge. At that time, the organization had received over $53 million in donations. The president was thrilled with the donations, but she was also very happy that awareness of the terrible disease was growing. The long-term outlook for the organization was positive. There were plans to spend the dollars carefullyfocus on research, treatment, and support for patients and families. I applaud the work of the organization, and really want to express my gratitude to all of those who have given their time, energy and money, and have participated in the Ice Bucket Challenge, the ALS Walk, and all of the other events that raise awareness and donations.

The one thing that bothered me about the interview was that the president spoke mostly of spending their new wealth on research. I understand that this should be a focus— it is my sincere wish that some treatment, cure, or prevention be found through this research, so that no one in the future has to struggle with this terrible, tragic disease. However, without sounding like "sour grapes" I would like to suggest that research does not help patients with ALS and their families NOW! — (there, I said it... )

I started to think about this, and I came to the conclusion that talking about research, funding research, is probably much easier to do than talking about and giving direct support to current patients and their families. Research is structured, focused, and the dollars spent can be documented and easily justified. Whereas, each ALS patient and their family is different. It's difficult to know what each patient or family really needs. To support the patient and their family successfully requires "boots on the ground" and grassroots coordination that a large national organization may not be able to do. Direct support is very expensive, time consuming, difficult to organize, document and justify. That's why local organizations and support groups are so important. I have to say that I have received much support from our local ALS Ohana  and the local chapter of the MDA – Mahalo! You know who you are.

So, I thought, what can I do to help the national ALS organization spend some of their donations on direct support – and I decided that I can offer a few suggestions based on my experience:

Subsidize Caregiver Support: Most ALS patients need 24-hour care. If we are lucky, we have family members and friends that care for us. However, this is not the case for everyone. Some ALS patients have to pay for caregivers. And, even if we do have family and friends to care for us, they need respite – we have to pay for some caregiver hours. Medicare and most insurance carriers do not cover this expense. Finding the funds for caregivers is a big worry and expense that I believe the national ALS organization should look at more carefully.

Train Caregivers: Taking care of ALS patients is a complex and difficult job. Whether the caregiver is a paid professional, volunteer, or family member, they need support and training. The national ALS organization could develop curricula and materials, including online resources, for caregiver training. The organization should provide funds for the local chapters and organizations to deliver these training sessions.

Subsidize the cost of medical equipment: Wheelchairs, ventilators, lifts, hospital beds, and all of the other equipment that ALS patients need to survive, add up to a big expense. Medicare and most insurance only pays 80% of the cost – that sounds pretty good until you realize that a ventilator, like the one I use to breathe, costs over $1000 per month to rent. That's about $300 per month for the patient. The cost of a power wheelchair is easily $20,000 or more – 20% of that... Well, I hope you get the point. All of this adds up. I believe the national ALS organization could help with these costs for durable medical equipment. We need to lobby Washington to find solutions to the rising costs of durable medical equipment.

Subsidize the development and cost of communication devices: Everyone can see the wonderful new technology on television and YouTube that allows paralyzed, even completely locked-in, patients to continue speaking and communicating with the world. The technology is there, however, it is still not available for the average ALS patient. It's very expensive, and must be modified to the specific needs of the patient. Medicare and most insurance companies are very reluctant to fund more than the most basic of these communication devices – and with the cost of healthcare skyrocketing, these communication devices are beginning to be labeled as non-essential. I beg to differ! Without assistive technology, I would lose my voice, my connection to the world. I believe that the national ALS organization can do more to promote the development of communication devices, and they should support the cost of these devices for the patients.

Provide Financial and Legal planning services: One of the most frightening things for my family when I was first diagnosed, was thinking about the financial and legal ramifications of the disease on our life going forward. The health issues were overwhelming, there was little time or emotional energy to spend on financial planning and legal documents. We tried to reach out locally, but have you priced the cost of a financial planner lately? Have you checked the cost for an attorney to draft a Will or a Power of Attorney? The expense is difficult to justify, so I believe that most ALS patients and their families probably just ignore these issues altogether, or try to do it by themselves – that's what we did. I believe that the national ALS organization could spend some of their donations on providing these services.

Patient advocates: Most ALS patients have difficulty coordinating their care, and it is very rare to find a healthcare provider that has case managers that really have the time and the expertise to have a positive impact. There are ALS clinics available in some areas, but for some of us they only offer limited services, are hard to reach or do not exist within our state. However, it's just not the availability of integrated care, it's also the availability of support when there is a problem. For example, when there is a dispute with Medicare or the health insurance provider over billing or services, the patient and the family has no one to help them. The ALS patient and family have enough problems just struggling day to day without having to fight a huge bureaucracy. I believe that the national ALS organization could do more to provide patient advocates.

Of course, my suggestions above are just that – suggestions. Some are probably just "wishful thinking" and others are no doubt already in progress. Whatever assistance ALS patients and their families can get is greatly appreciated. I am very grateful for all of support and assistance that I have received. My list above are just a few of the ways that I think the $53 million plus can be used to help ALS patients and their families NOW!